My life as a digital nomad living with MS

Birgit Bauer
Written by
Birgit Bauer

Being a digital nomad who travels, sees a lot and reports a lot sounds nice doesn’t it? To see different places, big cities, experience different things in different countries, meet people and have a glamorous life during travel. Most of the people think my life is like this when I tell them that I travel a lot.

For my job as a social media expert, journalist and patient advocate, there are times when I am only at home for two or three days in a row. The rest of the time? A cycle of: travel, come back home, sort out my luggage, do the laundry, the household cleaning, manage the family, have quality time for myself and with my hubby, and then: pack the suitcase and leave again. I continue my life as a digital nomad. Working at airports or hotels between events and flights, never without my notebook and smartphone. This can be exhausting and it isn’t as glamorous as some people think.

Traveling, whether for work or for holidays can be exhausting. So, my motto is: get prepared before you start. Living with Multiple Sclerosis (MS) or another disease, needs to be simple. Being organized means less trouble and more energy, giving you time to have a proper rest to recover. Usually, being organized means a long to-do list which must be done before you can leave the house. But it is worth it because it simplifies life.

Years ago, as I became a travel nomad, I developed a strategy of how to travel as comfortably as possible with MS. Without wasting time and energy, and being constantly exhausted. It’s not nice to come home totally exhausted and not be able to have time for other things because you have to stay at the bed, sleeping all the time.

1) My first thing was: have two of everything. Medication, things for the bathroom, make up etc. When I have to leave, I don’t have to worry about these things. They are already organized checked and packed.

2) The next thing is my backpack. It is always with me. It contains:

Medicine: transport all the medication you need with you in your hand luggage. When you use injectables I recommend asking the doctor for a confirmation letter in English and your own language to be able to explain security control at airports what it is and what the aim is.

Personal things: a little bag for make-up, my liquids of course in a plastic bag, prepared at home and ready to hand in at the security.

Food: chewing gum, sweets or cereal bars, for when I’m not sure when my next meal will be. A bottle with water, of course refilled or bought after security control.

A change of clothes: to be able to adapt my outfit for different climates: a shirt, a scarf which I use in the airplane because of the air-conditioning, some underwear and socks, just in case.

Technical tools? Of course! As a digital nomad there is always my computer, headphones, pens, adapter and my power bank to recharge my smartphone.

3) If you can do it before you leave the house, do it! Before I leave I do an online check-in if I have to fly. You can usually do it 24 hours before your flight, can choose your seat and store your boarding passes and everything else you need in your smartphone (or print of course). This makes life much easier at the airport, because you are able to check in your luggage straight away.

4) Use your smartphone as your center: My boarding passes and tickets are stored in the app from the airline and also in my electronic wallet. In my notes app I have a list with all important addresses and in my calendar are the dates for any meetings.

It is also helpful to know before your trip where you can find taxis or public transfers. Most of the cities offer an app, where you can buy your tickets and also have a look at the different transport lines and the timetable.

I have also stored a copy of my passport in my data folder. Just in case I lose it, then I can show it digitally. I have the emergency number for blocking my credit card if it is stolen.

5) Staying relaxed: Another important thing for me is reading. I am a book lover, but to carry lots of books can be very heavy. So, I have an e-book reader which stores all my books in one place and I can read whenever and whatever I want to read. I also have a meditation app on my smartphone which helps me to calm down and relax if necessary.

6) MS issues during your trip? Use a diary! During travel, no matter if it is private or a business trip, I have an electronic diary. I record my symptoms and experiences as this is important for me and also my doctor. If there is a relapse or other issues, I am able to tell him exactly what happened and ask the most important questions.

7) Let people know what you need to feel fine. When you are going out for a job and others organize your trip, let them know what you really need. Special food, maybe accessible hotel rooms, assistance at the airports – anything which makes your travel comfortable and easy.

8) Travelling in the UK: the sunflower lanyard. When you are traveling in the UK, you can have a so called “Sunflower lanyard” which you can wear to show that you are a person with hidden disabilities. The staff at the airports are educated in offering assistance if you need it. I have one for my trips to the UK and it helps without marking me as a patient. Find out more here: https://www.heathrow.com/airport-guide/assistance-at-heathrow/hidden-disabilities

I really like to travel and be independent, but I don’t like to have stress during a trip. This is the reason why I am so prepared and organized. It could seem a little bit weird to others, but it helps me to save energy, time and means I’m not completely exhausted.

Do you have tips or recommendations too? How do you travel?

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